Category: southern writing

creative nonfiction, Life in Alabama, southern culture, southern writing

Nine: All the Things

by rayclifton6 Comments on Nine: All the Things

*This post is part of a series. If you are new to the story begin here.

I had been sick for two years. Bounced from doctor to doctor with lengthy periods of waiting in between. I was looking for a diagnosis, and confident that my young doctor at Emory was the one who would finally get me back on a path to health. She had ordered “special tests,” and I only needed to wait two more weeks for the answer.

Actually, I saw no reason to wait until the appointment.

All the prior doctors had “patient portals.” These are internet sites through which you can access your medical records – appointments, lists of medications, test results, and messages. It is where the Redhead accumulated all the information that was in The Book.

Over the next three days, I received an email notification from Emory each time a new entry appeared in my medical record. These were the tests and the results. I was unfamiliar with most of them. Names like “Free Light Chains” and “Protein Electrophoresis.”

One addition to the Emory reporting system was an exclamation point (!) beside the test if the results were abnormal.

There were six tests – four had exclamation points.

I did not know what any of it meant, but I knew who did. I consulted “Dr. Google.”

Dr. Google had bad news. There were two likelihoods: multiple myeloma (a type of white blood cell cancer originating in the bone marrow), or a rare genetic condition called amyloidosis. Neither was good. My future included bone marrow biopsies and chemotherapy. Waitin’ around to die type stuff.

I got a second opinion from Dr. YouTube, who concurred.

I know it may sound hard to believe, but I was not devastated by the news. I was more stoic. In some strange way I was relieved that I had an illness with a treatment. When you are sick for a while, especially undiagnosed, you begin to think you might be crazy, and you are quite sure that others think you are.

The terrible thing about this experience was that I knew the Redhead was on her laptop across the room every night, conducting the same internet investigation.

One night I finally broached the subject.

“You know I have multiple myeloma, right?” I have never been one to beat around the bushes.

She began to cry.

“Hey,” I said. “It’s okay. We will get through this. I am strong.”

“I am glad to hear you say that, because I am going to need you to be.”

And that was that.

Another week passed and we made the trip back to Atlanta. We did not go straight to see the doctor but instead went to an exam room to get another Electromyography (EMG) test. This was a repeat of an earlier exam by another neurologist to determine if my neuropathy was progressing.

After a brief wait, the doctor came in with her intern in tow.

“Sir, the good news is that your neuropathy is not progressing. I have run all the tests that we have at our disposal, and I am sorry to say that your case is idiopathic. I simply cannot find an explanation.”

“You mean I don’t have multiple myeloma or amyloidosis?”

“No, no! Some of your test results were a little high, but nothing like we would expect to see with either of those conditions.”

I felt like all the air had gone out of the room. I was relieved – but stunned.

“So, what is next?”

“It is hard to say. You have some inflammation somewhere in your body which indicates some sort of autoimmune disorder. All we can do is try and manage your symptoms. I will give you some medication for your nerve pain and we will go from there. Sometimes cases like yours resolve themselves. It could be six months, a year, or a decade, but your symptoms may go away on their own. I am going to schedule an appointment to see you again in one year. In the meantime, call me if your nerve pain worsens. We may have to try several medications before we find one that works for you.”

We were quiet for a while on the ride home.

“Well, I guess we’re at the end of the line.”

“No,” she said.

“We have seen everyone I know to see and done everything we know to do. What else is there?”

“All the things,” she said. “We are going to try all the things.”

creative nonfiction, Life in Alabama, southern culture, southern writing

Seven: Stumbling Through the Dark

by rayclifton6 Comments on Seven: Stumbling Through the Dark

When we last left this story, I had experienced some unusual symptoms six months after hospitalization for “suspected tick-borne illnesses.” The most serious were chronic fatigue, neuropathy in my hands and feet, loss of balance and difficulty walking.

Over the next year I would make multiple visits to my general practitioner (GP), a rheumatologist, a neurologist, a podiatrist, an immunologist, a Lyme Literate Medical Doctor (LLMD), and a “naturopath.”

For the sake of brevity, I will mention some common themes in this exasperating journey.

In my first visit to the GP, I explained my symptoms and asked if they might be related to Lyme Disease. His response was “There aren’t many cases of Lyme in Alabama.”

He ran some blood tests that revealed abnormalities, particularly a high Rheumatoid Factor (RF) which indicated inflammation. He suggested I was experiencing the onset of Rheumatoid arthritis and referred me to a local rheumatologist. I waited six weeks for the appointment.

I met with the rheumatologist and recounted my story about my declining health since my hospitalization for Lyme.

Had I been to Maine or Vermont? If not, it could not be Lyme-related because there was no Lyme Disease in Alabama.

My examination was a quick look at my hands. “You do not have arthritis. You should see a neurologist.”

I went back to the GP (a four-week wait). He took more blood and called the next day. I needed to come back in immediately. My blood protein levels indicated my kidneys might be failing.

The re-test was “normal.”

He referred me to the local neurologist. The first available appointment was in four months.

My son had recently seen a neurologist in another town. She was accepting new patients, so I called the GP and had the referral changed, and in two weeks I was in her office.

I explained the situation once again.

“Your symptoms are typically associated with diabetes, alcoholism, chemotherapy, heavy metal toxicity and some rare autoimmune diseases. Lyme disease is also on the list of potential causes, but there is no Lyme Disease in Alabama.”

She sent me down the hall to get an Electromyography (EMG) test. It would show I had bilateral peripheral neuropathy (carpal tunnel in both hands and tarsal tunnel in both feet). My nerves were not sending or receiving signals.

She suggested wrist splints, orthotics, and physical therapy. I objected. I wanted to know the cause. Carpal and tarsal tunnel syndrome repetitive motion injuries. And why both sides of my body? She ordered more blood tests.

A week later her nurse called. I had an abnormally high RF. She recommended I see a rheumatologist.

I made another appointment with the GP. Armed with The Book, the Redhead asked if there was any significance to consistently low globulin levels in all my blood tests. “Isn’t globulin related to the immune system?” He insisted that it was probably not relevant but that he would refer me to an immunologist.

I waited three weeks for that appointment. He ordered another blood test. He called two days later to ask me to come back for consultation.

My test indicated I had no immunity to respiratory infections. He could give me infusions to raise the levels of Immunoglobulin (Ig), but my insurance would not cover the costs ($5K) since I had no history of respiratory infections. He did not think my immune system problem had anything to do with my neurological symptoms, and even if they did the infusions would not be strong enough to help.

I then made an appointment with a “Lyme Literate Medical Doctor (LLMD).” These doctors fly “under the radar” because Lyme Disease is so controversial in the medical community. They do not advertise nor accept insurance (I will have more to say on this in a future post).

He examined me and told me my hospital treatment was insufficient. I had neurological Lyme and should expect to be on antibiotics for a minimum of six months. He ordered the “Western Blot Test” (which has less than 50% accuracy) and said he would contact me with the results.

He sent an email two weeks later. The test results were negative. He suggested that I see another doctor. He did not respond to further calls or emails.

At the urging of a friend, I went to see a naturopath. He asked about my history and symptoms and had me place my fingertips on a metallic disk. He explained that he could detect microbes and toxins that other doctors could not through electric currents that flowed across the skin. A few minutes later his computer spit out a report indicating I had a host of problems including an unhealthy digestive, Lyme Disease, heavy metal toxicity, and pesticide exposure.

He was also something of a bad fortune-teller. He foresaw me buying $750 worth of supplements to combat these illnesses from his store.

I made one last appeal to the GP. I asked to be referred to a neurologist at a research hospital.

Six weeks later I got a call from Emory University in Atlanta. The first available appointment was in January of 2024. After some groveling and begging my name was placed on a “cancellation list.”

A week later I got a call. “Can you be here tomorrow at 8:00?”

Finally, I was going to get some answers.

creative nonfiction, Life in Alabama, southern culture, southern writing

Six: The Descent

by rayclifton6 Comments on Six: The Descent

I reluctantly began this story several weeks ago here due to the urging of others. It is difficult because it is personal, and I have always guarded such things. If we met on the street today and you asked me how I was doing I would say “Pretty good” or “Fine, thanks.”

I continue the tale with the hope that it might be helpful to someone.

The next part of the story may seem incredulous. Let me frame it this way:

Have you ever gone for a time, say six months, and one day tried to put on a pair of jeans only to discover that they are too tight? You ask yourself, “Have I put on some weight?” You step on the scales and find that you have gained ten pounds. Your first thought is “How did that happen?”

The answer is gradually. My progression into chronic illness was the same.

In the weeks following hospitalization, I experienced some tingling and numbness in my feet. I began to stumble a little, and my gait became unsteady. Walking up or down stairs and on uneven surfaces became challenging. I would lose my balance but “catch” myself on a wall or a chair. It was not a matter of vertigo or “light headedness.”  It was strictly mechanical. It was hard to walk a straight line.

I also lost a lot of weight. Most of it was muscle. The clothes in my closet (my sizes had not changed since my twenties) were now way too large. Clown clothes.

I rationalized that these two conditions were linked. I was simply “out-of-shape.” Muscle atrophy from inactivity had affected my mobility, and I could get back to normal with disciplined exercise. I started lifting weights and felt better immediately, but after a few workouts I experienced complete fatigue. Though it was difficult to get out of bed, I had responsibilities — my family, my church, and my employer. I stopped and re-started the workouts several times, but the results were always the same.

Sometime later the Redhead and I were watching television one evening. She asked, “Why do you keep rubbing your hands?” I realized they too were numb. I really had not noticed before that moment because of the issues with my feet.

The numbness gradually worsened. Both hands and feet were numb during the day and throbbed at night. The Redhead told me I was “moaning” in my sleep.

Still, I let some time go by. Surely all this was simply connected to the Specialist’s “post viral syndrome” diagnosis.

Then I began to experience something the medical community calls “brain fog.” I lost track of things. Wallet. Phone. Keys. Forgot the names of people I had known for a long time. Stopped in mid-sentence because I could not remember a word.

I finally started to worry. I had waited long enough, and I had to find another doctor soon.

Thus began my search for answers in the modern medical system. It would drag on for over a year.

creative nonfiction, southern writing

Four: Storm

by rayclifton10 Comments on Four: Storm

I am sitting in a grassy field under a small tent. A young nurse is taking my blood pressure. She is dressed in army fatigues, like one of the nurses from the old television show M*A*S*H. It is sunny and the light is very bright. She is talking to me, her voice muffled like we are under water. There are no other sounds. No birds singing, no traffic, no other voices. We are alone.

“We are going to get you to a room soon honey, okay?”

“My head hurts.”

And later:

I am lying in a bed somewhere. My head feels as if it were in a vice. I hear my son’s voice.

How you feelin’ dad?”

“I don’t know what to do. They gave me all these COVID kits to put together, and the instructions are in Chinese. Can you help me figure it out?”

I would later learn that the first memory never happened. I was admitted to the hospital by standard procedure, through the emergency room.

The second did. My son found me babbling like that the next day. I had received no treatment up to that point. My fever had spiked to 103.

I remember almost nothing about what transpired in the week that followed. Most of what I write reconstructed from The Book. Other things were false (or no) memories that the Redhead explained in the days and weeks afterward.

No, family did come to see you, you talked to them. Yes, you did have your phone, but I did not see you look at it. Yes, you were awake a good bit of the time. Yes, we talked about a lot of things. No, they did bring you meals. Don’t you remember any of that?

I did not. I do not.

The Book has pages and pages of tests. Bizarre imbalances in blood profiles. Some categories were extremely low, others alarmingly high. There were also MRIs, CT scans, and ultrasounds.

They were looking for West Nile virus, but that test was negative. They considered meningitis, but never did a spinal tap (an error, given what was to come). The baffled internist bowed out and referred me to the “Infectious Disease Expert.”

After four days of intravenous antibiotics and fluids, the blood tests returned to normal.

A memory, confirmed to be true:

I am sitting in a chair and a doctor is speaking to me in a quiet voice.

“Mr. Clifton you have been an extremely sick man. We have done a lot of tests, but we do not know the cause. I suspect it may be related to the tick bite you had, but tick-borne infection tests must be sent to a lab in Virginia. It will be two weeks before the results come back. Until then, I am giving you a prescription for one week of Doxycycline just in case. By the way, I noticed from your chart that you haven’t had your COVID vaccine, and I really think you should consider…”

“No. I am not taking your shot. You should focus on figuring out what I have rather than trying to get me to take some so-called vaccine for something you think I may get.”

“Sir this is not a political thing, but…”

“No, it is not political. End of discussion.”

“Understood. I will call you when your lab results come in.”

Admittedly rude, that. It might have affected our future relationship.

The Redhead drove me home soon afterward, but to this day I do not remember the ride.

Life in Alabama, nonfiction, rural life, southern writing

Part Three: Stormfront

by rayclifton8 Comments on Part Three: Stormfront

The following Monday I made the weekly hour’s drive to my employer’s headquarters for staff meeting and consultation with my coworkers. At that time, most of us were working from home, so Mondays were a chance to talk to a body in a body, even if was technically supposed to be from a “safe” distance. That had value for me. “ZOOM” was the name of a children’s program on Public Television when I was a kid. I wish it had stayed that way.

On the drive home I started to feel a little “off,” like I was coming down with something. Sluggish. A little feverish. You may recall from the previous post that this was June 2021, and COVID was beginning to make another run in Alabama. I imagine that anyone who had as much as a sniffle during those two years had the same thoughts that first went through my mind. What gatherings have I been to in the last week or so? Did that lady who sat beside me at church yesterday cough?

I took my temperature when I got home – 99.1.  Yes, I was getting sick.

I took a hot bath. As I toweled-off I made the discovery – an attached blacklegged (deer) tick. It was engouraged, so I knew that it had been there a while. I thought back. Must have been Saturday. I pulled it off and flushed it down the toilet.

Now, dear reader, I realize that you might not be the outdoors type. Perhaps you have never been bitten by a tick, and the whole idea that I could have acted in such a matter-of-fact manner seems incredulous.  But please remember that I am a forester. I had repeated that same process hundreds of times over the years. For those who work in the woods it is routine. Just an annoyance. Cost of doing business.

Tuesday morning. I felt worse. My head hurt a little and I was beginning to feel achy all over. So, I did what most folks do these days. Took my business down to one of the local “doc-in-a-box” franchises. There was a time when you could call your family doctor (now called your “Primary Care Physician”), but those days are gone. To do so now means two to four weeks unless there is a cancellation.

The routine at the corporate franchise is always the same.

“Have you been here before?”

Yes.

“What?”

I pulled my mask down to be heard. YES.

“Sir, please keep your mask on at all times. I will need you to fill out these six pages of medical history and consent forms. Sign or initial as indicated.”

But I did that last time I was here.

“We have updated our computer system. Oh, and I will need to make a copy of your driver’s license and insurance card. Also, your credit card for the copay.”

Thirty minutes later I made it behind the door to get my vitals checked and get the obligatory COVID test.

“You have a slight fever.”

Yes, that is why I am here.

“Go down to Room 2, second door on the right. The doctor will be in with you shortly.”

Several minutes later he entered.

“Good news, you do not have COVID. So, what brings you in to see us today?”

I have a slight fever and I do not feel well.

“Ah. Seasonal allergies. We have been seeing a lot of that these last couple of weeks.”

But I have not sneezed, coughed, or had as much as a sniffle.

“Well, that is probably coming. We caught it early. Stop by CVS and pick up some Mucinex D when you leave. I will have the nurse give you a steroid shot.”

Doc, I am sure this is not an allergy.

“Tell you what. We will draw some blood and see if everything looks okay. I will have the nurse call you back in if not. But I am quite sure you will feel better by tomorrow.”

I did not feel better tomorrow. I felt worse. Head and body. Like I was in the initial stages of the flu, but I still had no respiratory symptoms. My fever had crept to 100.

Wednesday, I went back. Same doctor.

“What brings you in to see us today?”

I saw you on Monday, remember? I have a fever and my headache is worse. My whole body aches.

“The steroid shot and the Mucinex didn’t seem to help?”

No. What about the bloodwork?

“Did we draw some blood? Let me check on that.”

A few minutes later he returned.

“You do have some elevated numbers here. Looks like you have some sort of infection. I am going to start you on a seven-day course of a broad-spectrum antibiotic.”

Doc, I do not know if this is relevant, but I should mention that I was bitten by a tick last weekend.

“I do not think so. Tick diseases are rare in Alabama. At your age it is more likely prostatitis. Go home and get some rest. Give the meds some time to work.”

Sunday, June 13. I go back again. My fever is holding at 100.5 and my headache is severe. Shut the door, close the curtains, turn out the light and get in bed migraine severe.

I got the same doctor. He ordered a chest X-ray.

I go back home and tell the Redhead that she needs to take me to the emergency room.

It will be one of the last things I remember over the course of the week ahead.